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Patient voices from around the world

Every story is different. But they all have one thing in common: the challenge of living with a medical condition.

“I am slowly realising and understanding that I am not a burden, even though it's hard.”
“Be yourself and don’t change your beautiful difference for no one.”
“What you're going through is shaping you, don't let the opportunity to love & live in the midst of pain pass you by.”
“It's sad to be in a body that seemingly feels like it's working against me, when it's truly trying to fight so hard for me.”
“I started to take the small wins as big ones and love my body for what it can do for me, and that's been a game-changer.”
“I am slowly realising and understanding that I am not a burden, even though it's hard.”
“Be yourself and don’t change your beautiful difference for no one.”
“What you're going through is shaping you, don't let the opportunity to love & live in the midst of pain pass you by.”
“It's sad to be in a body that seemingly feels like it's working against me, when it's truly trying to fight so hard for me.”
“I started to take the small wins as big ones and love my body for what it can do for me, and that's been a game-changer.”
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POTS
MCAS
Chronic Gastritis
Endometriosis

Juggling My Health with POTS, MCAS, Chronic Gastritis, and Endometriosis

“I first noticed something was wrong with my health when I almost fainted after having a hot shower before work. My parents had to call the ambulance, but my observations came out fine…”

Amy Castle
Diagnosed 3 years ago
Sturge-Weber Syndrome
Port-Wine Stain Birthmarks
Glaucoma

Through the Eyes of Sturge-Weber Syndrome, Port-Wine Stains, and Glaucoma

“The laser treatment was especially challenging as for the first few weeks my face was very sore, swollen, and purple, which did cause people to stare even more than they usually do, as I didn’t look “normal” …”

Amba Smith
Diagnosed years ago
Severe Aplastic Anemia

My Story of Navigating the Uncharted Territory of Severe Aplastic Anemia

“A lot of it was difficult - the chemotherapy and radiation, the weekly eye injections, the bone marrow biopsies, suffering unexpected seizures as a side effect of my medication, and much more…”

Bee Bee Ng
Diagnosed 7 years ago
Sickle Cell Disease

My Silent Struggles: Living with Sickle Cell Disease

“Sickle cell is a beast. Getting up every day is truly a fight in itself. You can be doing everything right, and yet the pain can still come and wreak havoc that is excruciating and indescribable...”

Si'yana Jones
Diagnosed years ago
Ankylosing Spondylitis
Rosacea
Fibromyalgia
Fibroids
Hysterectomy

A Queer Guide to Chronic Illness: My Rollercoaster Journey with Chronic Pain, Fibroids, Hysterectomy, and More

“I cried. I literally was just overwhelmed that someone finally told me something was up and that they had found something…”

Georgia Tournai
Diagnosed 1 years ago
Spinal AVM
Spinal Arteriovenous Malformation (AVM)

Embracing the New Normal: My Life with Spinal AVM

“It all happened so fast. The whole experience felt surreal yet frightening with the battery of tests I had to undergo...”

Vincent Xavier Low
Diagnosed 3 years ago
Ankylosing Spondylitis
Hashimoto's Disease

Unveiling the Invisible: My Journey with Ankylosing Spondylitis and Hashimoto's Disease

“I went to multiple physicians. In the beginning, all the doctors told me it was "all in my head" and that nothing was wrong with me. As a physician myself, it was crushing that none of the doctors took my symptoms seriously initially…”

Suhina Singh
CEO & Co-founder of Jonda Health
Diagnosed 3 years ago
Dysautonomia
Functional neurological disorder
hEDS
Small fiber polyneuropathy

Navigating the Uncharted: My Journey with Nerve-related Diagnoses

“My condition has significantly impacted my daily life. I have transitioned from being someone who was mostly at home to someone who has spent almost a year hospitalized...”

Ashley Tan
Diagnosed 3 years ago
Ehlers-Danlos Syndrome
Primary Immune Deficiency
Selective Antibody Deficiency
and more...

Beyond Ehlers-Danlos Syndrome: Life with Multiple Co-occurring Disorders

"It took 17 years to get a diagnosis of Ehlers-Danlos Syndrome. From there, more and more diagnoses have and continue to roll in..."

Mars Lombardi
(they/them)
Diagnosed 7 years ago
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